The Extra Burdens Faced by Young People with Chronic Illness

From years of writing about chronic pain and illness, I’ve learned that young people carry several extra burdens, especially when their disability is invisible (as is more often the case than not). This piece focuses on young people, although some of its points apply to people of any age, depending on their circumstances.

1. Young people are treated as if their health issues can’t possibly be chronic.

I hear from young people almost every day who've read my books or articles and write to me about their day-to-day challenges. For many of them, at the top of the list of those challenges is the fact that other people simply don’t believe that a young person could possibly suffer from a condition that might be chronic.

When young people are treated as if their condition can’t possibly be chronic, not only do they feel disregarded, but they may begin to question their own perceptions and judgment: “Is my body really this sick and in pain? Everyone says it can’t possibly be the case, so maybe it’s all in my head.” This questioning can lead to self-recrimination and can seriously erode a young person’s self-esteem and sense of self-worth.

This ignorance about young people with chronic illness has other consequences. Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. A young woman with multiple sclerosis told me that someone spit on her when she didn’t give up her seat to an older person on the subway.

I feel frustrated and sad when young people tell me that they’ve been challenged by others in this way. No one is too young to suffer from an invisible disability, and everyone should give others the benefit of the doubt.

2. Young people are repeatedly told: “You’re too young to be in pain.”

Source: Pixabay

Countless young people have written to me, saying that thiis is one of the most frustrating and hurtful comments they have to listen to. No matter what their diagnosis, they're continually told that they can’t possibly be in chronic pain at their age. Imagine how hard it must be to respond skillfully to a comment like that.

A 2013 study by the National Research Council and Institute of Medicine (NAC/IOM) showed, not just that Americans are getting sicker, but that young Americans are getting sicker. We need to raise awareness about the fact that chronic pain and chronic illness can strike anyone at any age.

I have a few comments on these first two burdens—comments that I’d like to address directly to young people.

First, regarding strangers who are rude, in my view, the best response is to immediately take care of yourself by not allowing their insensitivity to make you question yourself. The problem lies with their ignorance about chronic illness; it does not lie with you. Try to separate the person’s response to you from your response to yourself. In other words, you know you’re sick, and that should be good enough for you. It takes practice, but it’s worth the effort.

As for family and friends who say your condition can’t possibly be chronic or that you’re too young to be in pain, of course, you should try to educate them. But, in the end, not all of them may be receptive. Many of my friends dropped away when I became chronically ill. I’ve learned to treasure the few who've stayed with me and the few who’ve newly entered my life because I know they don’t question the chronic nature of my symptoms. I've worked on letting the others go. I feel better when I'm able to be okay with people sometimes disappointing me and to be willing to be content with those who accept me as I am.

3. Young people worry that they’ll never find a romantic partner.

Living day-to-day with an unpredictable medical condition makes it hard to sustain regular friendships no matter how old you are. It’s even harder to find romance. This is an ongoing worry for young people who are chronically ill. Many relationships don’t get past the first date. A young woman with Lupus recently wrote to me about a dinner date she’d had. The evening was going well, but when the guy found out that she wouldn’t be able to go to a concert on the weekend because she was scheduled to get chemotherapy, he lost interest in her all together.

When I got sick, I was fortunate to have a committed partner who took that “in sickness and in health” vow seriously. It’s a sobering thought to reflect on how unlikely it would be for me to find romance were I young. That said, it can happen if an understanding and patient person enters the life of a young person who is chronically ill. It helps to think of creative ways to meet people. One woman told me that she met her fiancé online through a dating site (be sure it’s a legitimate one). She said that the two of them had become so close via their back and forth emails that, when they finally met in person, it mattered not a bit to him that she was disabled.

College is usually a ticket to brighter employment prospects. But when chronic illness strikes, young people are often forced to drop out of school.

When I served as the dean of students at the law school at U.C. Davis, I tried to help a young man who’d been sick with what the doctors initially thought was an acute viral infection. When, after six months, he still hadn’t recovered, he was given the diagnosis of Chronic Fatigue Syndrome. He was a dedicated student and was determined to get his law degree. When he and I realized that he could no longer keep up in his classes, I put him on a four-year program, which extended his studies by a year so that he could take a lighter class load. We thought that would do the trick.

But soon, he lost his ability to take care of his daily needs. Some days he couldn’t get out of bed at all. This meant that he not only had to miss classes, but he couldn’t get to the grocery store to buy food. It became increasingly clear that he could no longer live independently. And so, after completing 3/4 of the units toward his law degree, he had no choice but to withdraw from school and move back in with his parents who lived in another state.

I felt so bad for him. Little did I know that eight years later, I’d be given the same diagnosis and be forced, in effect, to withdraw from the very same school.

Young people with chronic illness often have to think outside the box when it comes to their education. This can be very difficult to do when a person is already struggling day-to-day with not feeling well. Hopefully, a dean of students or the Disability Services Office on campus can help with brainstorming and with creative solutions, such as moving to an extended program or taking some classes online.

5. Young people must sit by and watch others their age participate in activities that are out of reach for them.

A few months ago, I read an article in The Atlantic that was written by the wife of a 33 year-old-man who’d been diagnosed with the autoimmune disease, Ankylosing Spondylitis. (The link is here.) In the article, she quoted her husband describing how difficult and polarizing it was to be with people who weren’t sick:

It’s, like, I’m still only 33. I probably am still considered in a lot of people’s eyes [to be] youthful enough that I shouldn’t have to deal with thinking about this kind of stuff. I feel like my parents were still partying and drinking beers [at 33]. This is the age my Dad was when they had me. I don’t think [he] was worrying about what [expletive deleted] pills he was going to take or not take, you know what I mean? They were like “We’re out of Budweiser.”

Many young people tell me about their once-active lifestyles as hikers or marathon runners or social activists or yoga instructors. They’re frustrated, and sometimes they’re very angry. Always…they’re sad. Worst of all, they tend to blame themselves for their inability to be active. I tell them over and over: “It’s not your fault.” I also encourage them to focus on what they can do and to look for others (online or in-person) who have similar interests. It takes effort, but it’s well-worth it.

6. Young people may be stigmatized by others.

When I was in grade school, all I wanted was to fit in or, at least, not be noticed. There was a boy named Alan in my 6th grade class who suffered from asthma so severe that he missed weeks of school at a time. When he did show up, everyone knew “this is the kid who’s always sick,” and we treated him differently because of it. There was certainly no fitting in, no anonymity for Alan. He was stigmatized.

I realize now how terribly hard this must have been for him. He had to deal both with his illness and with his peers treating him as different. I hope he’s had a good life, filled with love and understanding from family and friends. I wish I’d been compassionate enough to have been one of those friends.

7. Young people are burdened with worries about the future.

Of course, people of all ages and health statuses occasionally worry about the future. But young people who are chronically ill have years of health-related worries ahead of them—worries that are likely to include: What will happen to my health in the years to come? Will my condition gradually worsen? Will I become more and more restricted in my activities? Will I be able to support myself? Will I be able to live independently or will I become increasingly dependent on my family?

I encourage young people to talk to friends and family—even doctors—about these issues. The more information they can gather and the more support they have, the better equipped they’ll be to plan for the future.

***

Chronic illness imposes an extra burden on the young. The challenges I’ve discussed make an already difficult life even harder. My heart goes out to these young people and their families, especially their parents who often become their caregivers.

Thank you for this thoughtful piece. As a young person with a chronic illness, it is incredibly hard to see my peers live a carefree life while I'm mostly housebound. I worry about not being able to study and work, and who will take care of me when my parents become too old. This is a burden no one should have to shoulder,

I can only Concur with Siobhan's view on this matter.
I think it is even more terrible that usually the people in society considered to be the baddies have unlimited health and strength.
Where is the Justice God?

No one can imagine the strain a chronic illness has on a young person, no words, ideas or thoughts can even comprehend. People shouldn't know about illness until they are very old, young people with illnesses live crippled lives. There has to be an emphasis in society to cure these sicknesses so that people can live (at least on the surface) fairly normal lives.

Thank you for a great article. I was laying here trying to find info to try educate my family on what it is like to be in agony day in day out and pretty much house bound. However for any of my fellow pain sufferers I think it's important to not compare yourself to others. I have shocking back pain that started at 11, I am still traumatised by how many people never believed me but also I look at others who may have had a car crash or a bigger back surgery and they are pain free and wonder if I am just weak, need to harden up. Despite the extreme pain, five spinal surgeries, two more to come in the next month I am proud that I did manage to finish school, go to college and have a successful career but my biggest accomplishment is marrying my husband who never questions my pain. I unfortunately can no longer work but I hope to find a hobby and volunteer to help other young pain sufferers.
To all you out there, please never give up and don't feel alone. Xx

The alienation of friends has been very painful for my daughter. She feels so alone and I don't know how to fix this problem. If something happens to me she has no one and I worry every night. I wish her friends would be true friends and comfort her and spend time with her.

I agree with you 100%. I am mostly homebound and the worst of it is if I go do the activities I used to do for as much as I want to I cant accomplish them. Its like learning how to walk and talk all over again. I have vertigo labyrinthitis and even at work that I just got terminated from doesn't realize that this is life changing and would not accommodate my needs. This is difficult for them and others to understand that at this age someone can have something so chronic. As for the author of this piece thanks for letting out a bit of light. Loved your piece and shared it on fb.

Thank you for writing this piece. I was diagnosed at 34 with a few chronic issues and unfortunately I lost everything including my mind. Everything you wrote is true. In my case I started letting people and family members go. For those who would not leave me I found a way to push them out of my life. Not really the best idea but I didn't want them to see me suffer or suffer because I'm sick and can not do what I use to. It has been nothing less than a fight for 10years. People are mean,hurtful and rude. What they can't see they don't believe. I found it easier to act like I'm ok when my insides are screaming in pain. Counseling helps. I think it is important to know that some doctors will treat you like a lab rat and don't care about your suffering. It is best to be informed about your condition and the treatments available that are fda approved. So you can help take good care of yourself. Counseling, diet, exercise and non toxic people and Doctors should be a guide for you. Doctors like patients are a dime a dozen. Anti toxin teas and vitamins help fight inflammation. Inflammation causes pain. I know its not that simple but it might help in addition to med therapy. My prayers are with us all. Thank you.

Thanks for this thoughtful comment. I devote a chapter in my new book on young people, partly drawing from this piece I wrote. I had no idea what they were facing until they began writing to me after reading my first book.

Thank you SO much for this...as someone with multiple chronic illnesses and no family trying desperately to get through school for a career change that I HOPE and pray will allow me to support myself and work for as long as possible, I cannot tell you how much this article hits MUCH needed validation of the struggles I'm facing...between the financial, the medical, the physical...and having to hide it all from my school and the few friends I have, perform to the same standards as everyone else (while juggling MD appointments, procedures, and even hospitalizations) is its own "job" on itself...so exhausting and frustrating--and lonely. I'm determined and I WILL make it happen....but it's nice to know SOMEONE out there "gets it".

True...in theory, I "shouldn't" have to hide my illness. And maybe if I had family--the kind most are lucky enough to at least HAVE, no matter the relationship, for "better or worse"--I'd feel less afraid to open up. But in my particular situation, I've learned the hard way that my illnesses scare people: the more they know, the more they care about me, the more scared they are, and they tend to run (because it's overwhelming to them-->to be completely helpless in the face of a set of disorders that is progressing with no treatment or cure). And those who know less or care less (school/work/casual aquaintances) don't really care, think I'm exagerrating (that "you don't LOOK sick" nonsense....I don't LOOK sick bc I work very hard not to!), OR think I should "take time off until it gets better" or "give up" (so....I can be homeless and wait to die? no thanks)
I don't think there's a "right answer" for anyone....I do have a few people I share things with....and I try to tell them that I just want them to listen, to be "with" me, that I know they can't fix it and I know it's uncomfortable....unfortunately, people like that are harder (for me anyway) than one might think to find...

Just wanted to say hi and so sorry you are struggling, I remember school being such a huge challenge and no one really caring. If you need someone to email or chat I am more than happy too. My pain story is briefly above.

You're right; we shouldn't have to hide our illnesses or injuries, and we shouldn't have to deal with people judging us because we did more or less than they expected or being scared to deal in an appropriate manner with something we've learned to cope with every day. It's amazing how often people want those of us who have a few extra challenges to just give up, stop trying to survive or be halfway functional, stop reminding them of their own shortcomings or poor work ethic or that sometimes bad things happen in the world, especially if what they are doing may be contributing to it or to their own poor health down the road. That "just give up" attitude boggles my mind even more than those who can't understand that health issues won't always be visible, and that some days you can get away with pushing a little harder but you'll likely be paying for it later.

I hope that things like these blogs and discussions popping up in social media will enlighten others and help people to understand how important it is to take health issues seriously and to try to prevent problems. Those of us who are young need to be self sufficient, and can't always depend on things like having adult kids or others around to help us and having senior discounts and government programs to cover our needs, but our culture and our support systems are designed to reduce self-sufficiency rather than helping people to achieve it through accommodations or other assistance. Hopefully, in time, that will change. Glad you found some people that are supportive of you. Hope you are able to stay strong and accomplish your goals. :)

I think one other challenge that young people with chronic illness face is that during the teen years, part of the process of becoming an adult is drawing away from one’s parents and becoming increasingly independent. That’s hard to do when you’re too ill to care for yourself and your parents are your caregivers. It makes the already difficult process of growing up that much harder.

Loss of independence is difficult for chronically ill people of any age, but with young people, it can interfere with their developing sense of who they are as individuals.

Thank you so much for this article. It validated a lot of what I've been feeling. I struggle getting my own family to understand my illnesses. My own mother definitely has the "you're too young to have pain" and "young=healthy" thoughts. I keep trying to educate her but all she sees is the time spent with me while I am pushing through the pain and fatigue and thinks I just want attention most of the time. It is a very lonely place to be when nobody understands. I have multiple illnesses but she mostly sees them as "not that bad". I hope one day she will be more understanding which would be helpful as she is my main method of transportation (I have Epilepsy and can't drive for the time being). The fact that Fibromyalgia does not have a standard, physical test to diagnose doesn't help me as she accepts diagnoses with definite tests more than ones done by symptoms.

I gain so much from reading your articles, as they're so validating. THANKYOU! Even if I didn't have a chronic illness myself, they would educate and give some understanding about what loved ones may be feeling. Have you written anything about being a young CARER with a chronic illness? I'm still youngish (37), but finding it increasingly difficult to care for my mother - who has different issues, with different needs. My carer role has perhaps the greatest impact on my health on a day-to-day basis, and it feels like I'm alone in that.

You have summed up my struggles so well. I had to give up the dreams for a career as a concert pianist that I have held dear since I was 12 years old. People don't understand how my physical pain from the chronic, structural condition in my hand can possibly be so bad that it makes me physically ill. Even worse, now that I am not trying to pursue a doctorate and don't play 8 hours a day, the pain isn't as bad and people think there is nothing wrong with me. I am still trying to find a new career. It is completely overwhelming, at times, and depressing. And my issue is not as severe as that which many of your readers deal with. I cannot begin to fathom how much more difficult it must be for them. Thank you for writing this.

1.) The young sick person looks around them, and sees their healthier peers excelling where they falter, ultimately, likely to surpass them in many or most ways.

2.) The young sick person looks around them, and sees that their life has already been irrevocably damaged or altered by their illness. They will never have lived a normal life, come the end of it.

3.) The young sick person looks around them, and often cannot find solace, comfort, company, understanding, or even a belief in their problems. This exclusion renders them unreachable, and they are left to fend for themselves. 6 months...12 months...waiting for a single hour of a doctor's time, to be rescheduled twice, perhaps finally to be told to "come back if it gets any worse".

Your post is once again spot on, Toni. I agree with all and have experienced all. I am probably aging out of "young person" status at 39 but have experienced chronic illness throughout my life. Having a security guard yell in an accusatory tone clear across a parking lot at me, when I exited my car that I parked in a disabled spot, "Are you disabled?" remains a memory of frustration, embarrassment, and disappointment.

One final point I would add to your list:
#8 Young people are burdened with added pressure to have physically fit and attractive bodies. Youth is often synonymous with beauty. Maintaining fitness through exercise is difficult for the average person and is especially difficult for people with chronic illness. Many of my friends are exceptionally athletic and in shape, and while I am thin, I feel "less than" when I compare my body to others. Facial swelling, dark eye circles, periodic hair loss, and the effects of fatigue also add to feelings of inadequate beauty.

I work to overcome these seemingly superficial concerns in light of my more serious chronic illness, but anything that erodes self confidence and worth is worthy of consideration.

Thank goodness I haven't had pain. But even those with lesser problems share much of what you write about here. Growing up "different" is hard enough without a condition which, in my case, hadn't been named or defined yet. Even after it appeared in "the literature", no doctors had heard of it for many years and many still haven't. It's hard not being believed.

Thank you for this article. One of the most important paragraphs, IMO, is the one ending "...can seriously erode a young person’s self-esteem and sense of self-worth." Yes, and that doesn't (necessarily) go away in adulthood.

As someone who has a had a chronic illness since 12 these are all so true. Not only do doctors not listen your parents may not listen to you too. I grew up thinking that I was wimp because I struggled so much with all my symptoms. I also that I was crazy. Once my parents finally took me seriously the specialists I went to told me it was all in my head and that I needed to see a psychologist. That's hard for anyone at any age, but especially as a kid who is trying to find their voice, they take a huge hit.

THIS WAS SO EXCELLENT TONI! SO VERY SAD, THO. I WISH WE HAD A LIKE BUTTON & ALSO WERE ABLE TO FORWARD THIS TO FACEBOOK! WHAT A GOOD & VERY IMPORTANT READ! I OFTEN TELL PEOPLE VERY YOUNG PEOPLE CAN BE EXTREMELY ILL WITH CFS--THEY HAVE TROUBLE BELIEVING THAT!

Thank you everyone for these thoughtful comments and for sharing your experiences with all of us. I wish I could respond to you each individually but this piece has resulted in my In-Box being full of notes from young people. It will take me a while to get back to them all, but I wanted all of you to know that I've read your comments carefully, heartbreaking though they sometimes were. Those of you who are young are so brave and those of you who are their caregivers are so compassionate. I love you all.

Bonnie - I was confused by your comment about Facebook because there is a Facebook button you can click to share this with others on your Facebook page.

THE SHARE BUTTON ONLY TAKES ME TO LIDIKIN, WHICH I DON'T USE. THE LIKE ON FACEBOOK DOESN'T TAKE ME THERE. I'LL WATCH TO SEE IF IT SHOWS UP. THX. DON'T EVER FEEL U HAVE TO ANSWER EVERY COMMENT; I'M SURE NOONE EVER EXPECTS U TO GET TO EVEYONE--U HAVE A VERY POPULAR BLOG. I'LL ALSO GO TO YOUR FB PAGE--I'VE OFTEN SHARED FROM THERE WHEN IT APPEARS. SMILE!

Thank you for writing this. I am no longer a young person being 45 now, but I was one of these young people with chronic illness starting in my early 20's. It took years to even find out what was causing my strange symptoms and get medical help, but eventually found out I had a rare autoimmune illness plus was infected with Lyme disease. I struggled for years to work and support myself, spending everything I made just about on medical treatments. I had no energy after coming working all day to do much socializing or dating so eventually those invitations ceased to quit coming. After being laid off from job I found because of my medical conditions I could not keep a new job because as soon as they found out I had medical problems they booted me out the door within the 90 day probation period. So I ended up on disability at 40 and I feel like my life is over. I had to relocated to my parents hometown because cost of living is cheaper here and am embarrassed to say they help me financially because disability is not enough for anyone to live on alone. But it's rather challenging to get married or in a relationship so that they don't have to live alone when one has a chronic illness at a young age because people these days are so shallow they will dump you if you have the slightest thing wrong. Now I have to deal with people making fun of me for limping, but in next breath they will say nothing is wrong with you if I admit to being on disability. I so hate being asked "so what do you do?" when I meet someone new. I try to stay active with hobbies and groups so I can still even be around people my own age but it's not easy being accepted when I am "one of those people" as some people refer to those of us on disability as being the scourge of society. I feel so alone, and so isolated now that I do not work and am not around people my own age very often. It also hurts losing independence by having a parent help you financially on a monthly basis; it's so humiliating not to mention it gives elderly parents this idea that they can still control you and tell you what to do as if you were still a teenager. Like I have been told I am "not allowed" to go out of town and am told what hobbies I may participate in as well as where I am allowed to shop for groceries and sometimes even what I am allowed to buy. So many times I just wish I would go ahead and die because it seems like my life is already over. I keep trying to find a way to recover my health and hope and pray someday I will find someone who will love me.

AWWW. WHAT CAN ONE SAY? I SO HEAR YOU & FEEL SO BAD YOU HAVE TO LIVE LIKE THIS IN YOUR 40'S. I GOT SICK AT 57 & ENDED UP GETTING MARRIED AT 62; IT WAS A REAL STRUGGLE!! AFTER 7 YRS, I FEEL HE FIALLY ''ACCEPTS'' CFS & BELIEVES I AM TRULY SICK. I DON'T REALLY RECOMMEND GETTING MARRIED WHEN ILL, ALTHO THERE MAY BE MEN OUT THERE WHO CAN HABDLE THAT. FROM YOUR LETTER, I WOULD SAY U R HANDLING THINGS VERY WELL. I ACCEPT FINANCIAL HELP FROM MY DAUGHTER--VERY HARD ON THE PRIDE! AS I GET OLDER THINGS GET HARDER & I KNOW HOW YOU FEEL ABOUT YOUR LIFE BEING OVER. BUT JUST HANG IN THERE. FEELING SAD PASSES & WHO KNOWS WHAT MAY HAPPEN DOWN THE ROAD? I PRAY YOU WILL FIND A VERY SPECIAL FRIEND TO DO THINGS WITH. AS FOR YOUR PARENTS, JUST LET THEM FEEL THEY R IMPT & HELPING U IN THIS DIFFICULT TIME!! BLESSINGS FROM ALBERTA, CANADA.

There is nothing I can say to help you, but I just wanted to give you my support. I hope it will be of comfort to you in some small way.
I don't have the exact same conditions as you, but I am financially and practically dependent (for transport etc.) on my parents since my twenties. It's hard to feel like a grown-up that way, even though in my case they try their very best not to restrict me in any way. Still, it is hard for them to really let me go, because of this dependence way into my thirties.
What I mean is: I don't know exactly how you feel, but I have some idea, since I share some of your experiences.

Best of luck to you.I hope you will meet more people who can accept you for who you are and look beyond the illness.

I was very moved by this, as by other posts here and the article itself. I totally relate to what you say about the awkward 'what do you do?' question. I was on sick benefits for a while but am now self-employed and receive benefits as a low paid self-employed person. Is there anything you could do to earn a bit of money here and there, such as crafts or online work? Even if you only do a few hours here and there, it's a different answer to the awkward question and provides a new topic of conversation, as well as feeling quite rewarding.

I had a similar situation as a child/teen when discussing my parents. My dad was disabled and cared for by my mum. But my dad edited a magazine for disabled people and my mum wrote journal articles, so I tended to focus on that. I think voluntary work counts as a valid answer to the question.

It's unacceptable and sad that anyone sees disabled people as undeserving of benefits and unfortunate when invisible disability leads people to assume someone is not genuine. But it's also the case that discussing jobs is seen as a not very personal thing to do with someone you've just met, whereas discussing disability can get quite personal. I guess at least you're managing to do hobbies which can be another of those useful conversation starters (and usually more interesting than discussing jobs anyway!)

I'm 28 now but was dx'd at 23. Both dx's were so severe at that point, I had to quit working just two months after I turned 24. I've been on SSDI since I was 26. I feel ya.. I used to be tormented by the thought I wouldn't ever find someone who would love me, illnesses and all but almost 2 years ago my high school sweetheart came back. That was my luckiest moment ever- to have someone who loved me then come back and want to take care of me now. I was extremely nervous of going to one of his work things and having to answer what I did for a living, he told me- just say you're medically retired. It works decently well, most people get uncomfortable and don't want to impose or be rude so they don't ask anything further. Maybe you could use that too? I couldn't imagine that type of home life, maybe you could find someone else who is chronically ill and lives off disability to rent with? Hugs, I don't relish the memories of being so utterly lonely and sad. If you ever need to chat, I'm here.

Self-pity is a worst destroyer of life than any disease. Consider what Laura Hillenbrand has accomplished is spite of being bedbound since her college days with CFIDS--2 best selling biographies both being made into movies and marriage to her college sweetheart.

No one's situation is like another's. Comparing what one person can do despite being ill to what another person can do serves only to make one of those people feel bad and unworthy. It's best to examine our own lives and do the best we can with the circumstances we find ourselves in. Self-pity is not fruitful, but I saw no self-pity in my article—just the sobering facts of the burdens many young people who are chronically ill face.

Self-Pity is seen as a weakness that no one should indulge in, but it is an unfair understanding what people go through. There is a natural grieving process for people who are limited by illness. While they might be able to capitalize on strengths to achieve despite an illness, this is not always possible. One needs tremendous support, good enough health, and finances to manage despite an illness. Some people are overwhelmed with debt, declining health, other responsibilities, no medical coverage, or just surviving. Good God, many chronically ill end up homeless without the support of family. They might not be able to write a novel or even get educated. As one adapts and adjusts, their situation may worsen - leading to new struggles and new grieving. Some people are lost and we need to boost them up, not admonish them for pitying themselves.

Lupus Lady has described my struggles perfectly! When she wrote "As one adapts and adjusts, their situation may worsen - leading to new struggles and new grieving." I thought "YES!!! Someone else understands!" I feel stuck in a perpetual grieving process precisely for that reason. The only thing that has helped me recently is my decision to no longer say "Things can't get any worse" and "I can't handle this anymore", because things DO keep getting worse, but I'm still here so obviously I CAN handle it. But it's a process and one I've been immersed in for almost 7 years. Remaining lost in self-pity long-term won't help anyone - it certainly hasn't helped me. However, to deny people their right to grieve is insensitive and can have catastrophic effects.

First, thank you so much to Bonnie and to Judith for responding to your comment. I'm so sorry you're in such a tough situation. I wish your parents could give you the support you need without strings attached. I hope with all my heart that you can find some people to be supportive who you like spending time with. Please don't give up hope. It can happen. I know because people write to me about this...just when they thought nothing would change for the better for them, it does.

With all my best wishes. And thank you for sharing with all of us.
Toni

Being disabled by CFS is different than more well-recognized diseases. I cannot work. I get medical "treatment" through the local county hospital which seems to not authorize treatment or official diagnosis without a test result to back it up.

I've gone from doctor to doctor, getting every test under the sun and repeatedly being told they think its CFS (if they don't get stuck swearing there's nothing wrong with me). BUT I cannot get an official diagnosis of CFS and I always get referred to psych once everything else is ruled out.

Its bad enough that I have no medical treatment. I rely on rest, hot baths, herbal supplements & vitamins, tv, and an online support group as my only treatments.

Yet, without a doctor willing to give me an official diagnosis and declare me disabled, I cannot get services like nursing care. I am dependent on my boyfriend to do everything for me. If something happened to him, I'd be dependent on my dad (who's in his 60's & has already had a stroke) until he gets too sick. Then, I'd have no where to go.

Being in my 20's having a relationship with someone completely healthy is difficult. He has no experience to understand me by and he wants to have more fun than I can give.

I can only live day by day hoping that, before my dad becomes too sick, there's some scientific breakthrough legitimizing my illness. Otherwise, I'll literally die if my boyfriend and I break up. I cannot take care of myself.

That's the toughest part of having health issues that are poorly understood. You don't get the benefit of financial support programs that others have due to the complexity and cost of the care you need, and organizations that are supposed to help people with disabilities expect you to rely on those you live with for more financial and physical support that those people shouldn't have to give. Too many people with chronic illnesses end up without what they need to survive and with no physical support because our "safety net" system overtaxes our loved ones who aren't mentally equipped to deal with those illnesses and the financial strain that they bring. Getting people to recognize that it is a problem and getting them to understand that they should want to change things because they could be in that position some day are more difficult than you would think. Glad you have someone who is there for you, and wish you luck with your attempts to improve your health. If you haven't tried it, I would look for a naturopath. You'll likely have to pay cash for anything that involves actual health care, but they are more geared towards resolving health issues rather than treating symptoms, and don't just take the lazy route and blow you off like traditional doctors that only care about getting a paycheck without being sued for malpractice rather than whether or not they are actually helping their patients. Not having to fight people every step of the way to get them to do their job will probably be less exhausting, too.

AUDRI--DON'T LOSE HEART! I WAS DIAGNOSED 12 YRS AGO, BUT THINGS R NOT MUCH DIFFERENT FOR ME. THERE IS NO REAL TREATMENT FOR CFS, BECAUSE WE STILL DON'T KNOW WHAT'S CAUSING IT! I'VE VEVER HAD THE ENERGY TO RUN FROM PLACE TO PLACE LOOKING FOR A MAGICAL CURE THAT JUST ISN'T THERE---YET! HANG IN THERE, DOING WHAT U R DOING. U KNOW NOT WHAT THE FUTURE WILL BRING--ONE DAY AT A TIME! BLESSINGS.

I appreciate this beautifully written article. As a person with Fibromyalgia and Chronic Fatique, I relate to this. I am not 'young', I guess. I'm 57, but still feel young at heart. I haven't been able to work for several years and that can be a challenge for people to understand because I don't look sick. Sometimes I believe they think I'm faking it, or just being lazy. Thankfully I have a wonderful partner who understands and takes good care of me. Thank you for writing this and doing what you do.

I am the mother of a chronically sick 18 year old. He has been sick and even sometimes homebound since age 12. Misdiagnosis and disbelieved has only compounded the frustration. Having misunderstood Lyme disease and now PANS has lead to depression. Can't work, college didn't work, lost IQ, memory etc. Gained major weight and now doesn't look or feel like the person he once was. I feel it is harder on males. His friends didn't stick around, he lost all sports which had been a huge part of his life. Now he feels he isn't good at anything. He isn't talking to me like he used to so I worry even more now.
I am taking the article with me to his new psych appointment on Wednesday. So far no one seems to get him nor do they know how to help him. I think the article sums up everything.
Best wishes to everyone!

I wish there was someway to contact one another through here. I had Lyme disease and managed to get well though I do have residual arthritis from it and I feel I could probably offer advise on best forms of treatment and "after care" after the antibiotic treatments are completed. Best thing I can advise is make sure he is on a high dose of Vitamin D3. I feel like I would have been able to fight the initial Lyme infection off when first bitten if I had not been deficient in Vit D like so many others are. Years later I started taking it and am a lot healthier than I have been in years. There are a number of other supplements I take and things I do that also has helped, but it's too complicated to get into here. I do hope you son's health improves and let him know he is not alone in his Lyme struggles, but he can get better and get some of his life back. ((hugs))

I'm sorry to read about your son. It must be so difficult. I hope that taking the article to the new psych appointment will be helpful. I tried to make it as comprehensive as I could. I wish you all the best. You sound like a devoted and compassionate mother.

What a miserable situation for the whole family! I can't imagine. But I can believe the disbelief; sooo many have experienced that.

I doubt that so VERY many lie to their doctors or are hypochondriacs. Doctors' default reaction should be first to believe what the patient and/or the parents say. (First do no harm!) It can mean so much just to be believed.

I hope that the new psych is very good, and that you also have a neurologist (or other appropiate specialist) and that they can cooperate with each other. Best wishes to you and your son!

Exactly. If a doctor isn't taking an illness seriously and isn't treating it, how can they think they're going to resolve anything? When in doubt take health issues seriously and add a few shrink visits rather than causing irreparable damage unnecessarily.

As I stated in my original comment, I was incredibly moved by this article. Facing multiple chronic illnesses and progressively worsening health--with no family to help me or support me--while trying as hard as I can to live life and get through school so that I can try as hard as I can to work (to get healthcare and food and medicine) is often disheartening, and not something even the few amazing friends I do have can begin to understand. I felt truly blessed to come across this article and to see in writing all the things I think and feel and WISH I could somehow explain without sounding like I was complaining.

Each one of us who reads this comes with our own story. For me, I have several illnesses....I'm perhaps "more lucky" that they are diagnosed more easily, that they have names, that they show up on tests and are more "believed". I am likewise "less lucky" in some other ways--no family at all to fall back on no matter how bad things get, a very grim prognosis, the loss of most of the people who called themselves both surrogate family and friends.

I spent a long time being angry, and a longer time in mourning. It would be naive of me to think I'm done with those emotions "forever"....each progressive decline in my health will naturally bring me to revisit them, to become fearful for myself and my future, as the "at some point" comes closer and the decisions I have to face alone become more serious.
But until then--and in between those moments--I'm starting to appreciate the small things. Sometimes they're really small--like waking up in the morning without puking up last night's meal(one of my illnesses involves GI failure). Or the sound of a friend's voice on the phone. Getting to Friday is ALWAYS a celebration for me--a bigger one if I made it without a trip to the hospital, but still a celebration if I had to "stop by the ER" sometime along the way during the week. (I admit, I HATE finding myself IN the hospital on a Friday evening. THAT kills my mood.)
And I appreciate seeing articles like this--that remind me that I'm NOT the only one who faces the struggles that I hide every day. That SOMEONE--or more than one someone--understands what it's like for me. That I'm NOT ALONE, even when I feel like I am.

Unfortunately, I don't think anyone has "solutions" for any of us...(though if someone DOES, feel free to pass them along!!) I think the only "solution" is taking comfort in knowing that others have gone before us and have survived....or are going through the same things, and "get it". There's comfort in numbers....

On one hand, I am not young anymore, but have lived with Lupus for 12 years since my early 30's. I've had to end a relationship because of his inability to understand that my disease trumped his needs (through no fault of my own). I couldn't take care of him emotionally and struggle with my health. Now, at 45, as I am plateaued, I am also alone. My family has suffered, my career, personal ambitions, and definitely relationships. I never found anyone (past a few dates) who could handle dating someone with an illness. Even someone as lucky as myself to be as well as I am (compared to others suffering from Lupus). My limitations, while accepted by me, can be very annoying to others. I have lost friendships too.
On the other hand, I also have 4 children who suffer from chronic illness. It kills me to see them go through this. Success is difficult, they worry about ALL the things you mentioned. I worry too. How will they keep a job? Sometimes they can't. How can they finish college? My daughter had to leave. How can they live on disability pay? They can't, neither can I. What will we do when they are off my insurance? What if I get laid off and lose benefits? How will we pay our current bills? Who will end up in the hospital next? We, as a family, live in constant anxiety. Look, we also know how to try to make good with what we DO have and I feel we are good at being positive, adapting and taking care of ourselves. BUT that doesn't change the REALITY of a society that does not value people who are chronically ill, judges them by their disability, judges them that they "look ok" or haven't died yet. People get tired of you being ill (after a period of sympathy, they get annoyed). People tend to expect one to get better or be terminal. They don't know how to handle an illness that just stays. I love this article, and will share it with everyone I know. I will share it with our school's counselors too. Society needs to get on board with what chronically ill people need. We can be so brilliant and productive, with a little bit of accommodation and understanding, we can achieve. Or not, maybe we will just BE. And THAT needs to be valued too.